GIVE-6 BACKGROUNDER

About Joshua Joel Fletcher:

Joshua Joel Fletcher defied all odds.

He was his sister’s biggest fan, traveling from competitions and shows throughout Florida cities to watch her dance. Every birthday, he enjoyed the taste of cake icing his father would sneak him without his mother watching. Every night, he refused to fall asleep until the last words he heard were his mother’s praying over him. Before she could even finish, he eased into sleep knowing that – no matter what – all things would be okay.

Joshua Joel Fletcher was born on June 10, 2008 to parents, Ian and Patrice Fletcher and older sister, Julia. After 3 months, he was diagnosed with Spinal Muscular Atrophy, what some may describe as a death sentence. Spinal Muscular Atrophy (SMA) is a rare, autosomal recessive disease caused by genetic defect in the SMN1 gene, meaning Joshua’s voluntary muscles – used for activities such as crawling, walking, swallowing and controlling his head and neck – were non-functional. However, he felt every sensation and was cognizant of all movements and activities around him.

In September 2009, doctors predicted that Joshua would not have long to live and asked his parents to make a quality of life decision. Against all odds, his parents choose life for Joshua. They researched all they could about SMA, found the best respiratory care and team of physicians and took a vested interest in learning how to best care for Joshua and his condition. The Fletchers, determined to provide Joshua with a full life, became a traveling hospital - carrying everywhere a ventilator, suction machine, oxygen tank, feeding machine and more. Because of their perseverance, he visited the Samuel P. Harn Museum of Art and the Butterfly Rainforest exhibit in the Florida Museum of Natural History. He traveled outside of the city to Sea World in Orlando, the Florida Aquarium in Tampa and the Jacksonville Zoo and beach. He even watched his father and mother ceremoniously walk across the stage on May 4, 2013 to jointly receive their degree from the University of Florida.

Sadly, Joshua’s journey came to an end on October 12, 2013.

“Joshua Joel Fletcher taught us to love unconditionally and to give thanks for what we have, not dwell on what we cannot change or control,” states Patrice Fletcher, with Ian and Julia in agreement.

Joshua Joel SMA Life Inc. was incorporated March 20, 2012 with the mission to accelerate the development of a treatment for SMA. To honor his legacy, Joshua Joel SMA Life Inc. is hosting its inaugural video games drive, “Give6” to benefit underprivileged children this holiday season.

About Joshua Joel SMA Life Inc.:

Joshua Joel SMA Life Inc. is dedicated to the advancement of a comprehensive research program and cure for Spinal Muscular Atrophy (SMA), the number one genetic killer of infants and toddlers. Its mission is to accelerate the development of a treatment for SMA.

About Spinal Muscular Atrophy (SMA):

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. SMA affects muscles throughout the body. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

SMA is an autosomal recessive genetic disease. In order for a child to be affected by SMA, both parents must be carriers of the abnormal gene and both must pass this gene on to their child. Although both parents are carriers, the likelihood of a child inheriting the disorder is 25%, or 1 in 4.

About Partners:

O2B Kids is an Edutainment Company. They offer preschool education programs for children 0 to 5 years old, afterschool enrichment programs for elementary school students and an unprecedented family membership program for all kids 0 to 13 years old. O2B Kids is a place that opens minds, improves self-confidence, develops social skills and strengthens bodies. O2B Kids helps children discover hidden talents and promotes a passion for discovery.

Children’s Home Society of Florida protects and heals children, builds and strengthens families, and rescues and embraces teens struggling to survive on their own. Their mission is to embrace children and inspire lives. Their dream is to break the generational cycle of child abuse in more families; protect children from harm; heal children who’ve been hurt; create strong, stable families and help children grow up safe, healthy and prepared for life.